Sjogrens

[Guest guest]

Hi Jen - I have Sjogens. First, follow the advice you have received, i.e.

check out side effects of the drugs that you are already on - you can google

em up, pubmed is quite good. Next, IF you find any such side effects from

your drugs, dryness etc, then discuss with your doctor.

 

Sjogrens is simple to test for. Schirmer Test - a litmus paper test in the

eye. Also a blood test. IF they haven't tested you correctly for Sjogrens

then Sjogrens cannot be so determined! Meds for Sjogrens are very cheap, they

are false tear drops, Hypromellose, which is available over the counter -

try and get it preservative free, in which case, even better to get the single

dose applications. Costs in the UK, summat like £2.30 for month supply

Hypromellose to about £5 for the single dose preservative free. (So, just

over a

dollar to $2.50, lasts for a month.)

 

IF your eyes go into sloppy, which IF you have 'true' Sjogens they will,

that is, streaming teary, then punctal plugs are the answer. At which point

you

will very rarely have to use the Hypromellose.

 

Sjogrens can also cause dry mouth and sometimes mouth ulcers. Sip *plain

water. Also causes dry skin, use a good skin emmolient - your pharmacist will

recommend which one is best.

 

You need to be taking a good fish oil, krill is excellent if you can get it.

High EFAs. Also, take plain yogurt for the gut wall.

 

_http://i-health4u.info/eye/dry-eyes/_ (http://i-health4u.info/eye/dry-eyes/)

- very good article on dry eye syndrome

 

_http://www.lef.org/protocols/immune_connective_joint/sjogren_syndrome_01.htm_

 

(http://www.lef.org/protocols/immune_connective_joint/sjogren_syndrome_01.htm)

- (extract)

 

 

" Essential fatty acids (EFAs) and eicosanoids, short-lived “messengerâ€

hormones derived from EFAs, have been implicated in the abnormal function of

salivary and lachrymal glands. Measurements in Sjögren's syndrome patients have

shown that EFA deficiencies are present (Oxholm P et al 1998), and controlled

clinical trials of supplementation with EFAs, including gamma-linolenic acid

(GLA), have yielded positive results (Horrobin DF 1984).

Omega-3 and omega-6 fatty acids (EFAs) have been shown to alleviate symptoms

of autoimmune disease by supporting the immune system and reducing

inflammation (Harbige LS 1998; Horrobin DF 1984; Horrobin DF 1986; Oxholm P et

al

1986). EFAs accomplish this in several ways:

* Determining whether genes are expressed

* Producing eicosanoids and cytokines

* Activating antioxidant enzymes

 

 

Cytokines. Cytokines are intercellular messenger chemicals that can be pro-

or anti-inflammatory. Essential fatty acids support production of

anti-inflammatory cytokines (Harbige LS 1998).

GLA. GLA is important to the production of the anti-inflammatory

prostaglandin E1 (PGE1). Evening primrose oil, which is rich in GLA, may

correct

immunologic defects, halt atrophy of salivary and lachrymal glands, and

increase the

beneficial PGE1. Direct supplementation with GLA has resulted in clinical

improvement in Sjögren's syndrome, scleroderma, and other conditions including

high blood pressure and high cholesterol (Horrobin DF 1981). " (more)

" Avoiding Dry Eye

* Tear substitutes are efficient in mild to moderate cases of dry eye,

although some may increase patients' complaints because of the preservatives

they contain. Preservatives can be avoided by using monodose disposable

packaging or brands that are preservative-free (Baudouin C 2004). Recent

research

suggests that topical cyclosporine is a promising possibility in treating

dry eye (Kujawa A et al 2004).

* Studies have demonstrated that calcium carbonate in a petroleum base

relieved dry eye when applied to the lower eyelid (Tsubota K et al 1999).

* For mild to moderate dry eye, slow-melting lubricating pellets,

available by prescription and inserted into the lower pocket of the eyelid

twice

daily, will bring relief. Lubricating ointments are best used at night as they

tend to blur vision during the day.

* Moisture-chamber eyeglasses will help preserve tear volume by

minimizing airflow over the surface of the eye.

* Closing the tear ducts by using collagen or silicone plugs can

increase tear volume by reducing drainage. The collagen plugs are absorbed;

silicone plugs are easily removed. The lower tear ducts (punta) are sealed

first; a

determination is then made about sealing the upper punta. If permanent

closure seems warranted, electrocautery or argon laser can permanently close

the

punta (Carsons S 1998)

* Avoiding dust, fumes, and excessive makeup, especially around the

margin of the eyelid, may also help.

Dental Caries: Protecting Your Teeth

* Brush frequently, both before and after meals, using an electric

toothbrush. Floss and irrigate the teeth (using a Waterpik ® or other tool)

frequently. Among Sjögren's patients, oral hygiene is crucial in combating

tooth

decay. See a dentist regularly to monitor tooth decay and loss of enamel.

* Use a pH-balanced mouthwash to lower acidity. Try 1/4 teaspoon of

baking soda dissolved in 1/4 cup of warm water. Alcohol-free goldenseal (H.

canadensis) can be used as an antibacterial mouthwash. Dissolve 30 drops in 2

oz

water and swish the solution about in the mouth.

* Avoid sugary foods. Bacteria produce acid for 20 minutes whenever

sugar is ingested. Avoid acidic foods, including citrus fruits.

* Drink non-acidic bottled water (Wu AJ 2003).

* Use a straw to protect the mouth when drinking soft drinks and other

acidic beverages.

* Avoid abrasive toothpastes that can harm already compromised tooth

enamel. Certain toothpastes (e.g., Biotene) have been specially formulated for

individuals with dry mouth.

Fighting Oral Dryness

* Drink plenty of water to replace the lost moisture in the oral

cavity. (Remember to avoid acidic beverages like tomato and orange juice.)

* A sugarless candy or sugar-free chewing gum kept in the mouth can

stimulate saliva flow. Xylitol, a sugar substitute used in candy and gum, is

thought by some to inhibit dental caries. Never sleep with anything in the

mouth. Many health food stores carry rice- or barley-sweetened candies.

* Avoid caffeine, which is diuretic.

* Oral interferon-alpha in lozenge form, available by prescription,

will significantly increase saliva flow (Ship JA et al 1999)

Goldenseal (H. canadensis) can help compensate for lower levels of

antibacterial enzymesin the saliva. Swish with 30 drops goldenseal dissolved in

2 oz

warm water, as suggested under “Dental Caries: Protecting Your Teeth,â€

above.

 

Protecting Your Nose and Throat

* Use a humidifier to keep the air moist.

* Breathe through the nose rather than the mouth; a soft cervical

collar will inhibit open-mouth breathing at night by supporting the jaw. Keep

your

bedroom cool (Carsons S 1998).

* A mixture of saline and aloe can relieve dry nasal membranes and

nosebleeds and is gentle enough for repeated use.

Skin and Vaginal Dryness

* Avoid antibacterial and abrasive soaps; use soaps with added oils or

moisturizers and moisturize the skin after bathing.

Life Extension Foundation Recommendations

Sjögren's therapy attempts to reduce the symptoms associated with the

disease and help secretory glands excrete more fluid. Sjögren's patients are

also

advised to avoid drugs that decrease the function of salivary and tear glands,

including diuretics, antihypertensives, and antidepressants.

Sjögren's patients should consult with a physician before launching a

self-care program aimed at alleviating their condition. While prescription

drugs

are available, they are associated with side effects that can reduce the

quality of life. Life Extension's comprehensive Sjögren's recommendations

include:

* _EPA and DHA_

(http://www.lef.org/newshop/cgi-shop/searchItems.cgi?keyword=dptepadha) : 700 mg

EPA and 500 mg DHA twice daily with food.

* _GLA_

(http://www.lef.org/newshop/cgi-shop/searchItems.cgi?keyword=dptgla) : 285 mg

one or two times daily with food.

* _Life Flora_

(http://www.lef.org/newshop/cgi-shop/searchItems.cgi?keyword=dptprobiotics) : An

intestinal bacteria to assist with digestion

* _Thymic Immune Factors_

(http://www.lef.org/newshop/cgi-shop/searchItems.cgi?keyword=dptthymus) . Follow

directions on label.

* _L-glutamine_

(http://www.lef.org/newshop/cgi-shop/searchItems.cgi?keyword=dptglutamine) :

500 mg daily.

* _DHEA_

(http://www.lef.org/newshop/cgi-shop/searchItems.cgi?keyword=dptdhea) : Blood

testing is recommended before DHEA therapy begins to

establish a baseline; then a starting dose of 15 mg to 75 mg may be

recommended.

Retesting is recommended three to six weeks afterward to ensure youthful

levels.

 

* _Goldenseal_

(http://www.lef.org/newshop/cgi-shop/searchItems.cgi?keyword=dptgoldenseal)

(H. canadensis): Follow directions on label.

 

_http://www.eyelidsurgery.co.uk/conditions/blb-wateringeye.htm_

(http://www.eyelidsurgery.co.uk/conditions/blb-wateringeye.htm) - watering

eyes

 

_http://sciencedaily.healthology.com/healthcare/article966.htm?pg=2_

(http://sciencedaily.healthology.com/healthcare/article966.htm?pg=2) -

medical

information on the internet - useful

 

_http://www.bssa.uk.net/_ (http://www.bssa.uk.net/) - Sjogrens

Association (vaguely useful)

 

_http://www.patient.co.uk/showdoc/40001283/_

(http://www.patient.co.uk/showdoc/40001283/) - good account of Sjogrens

(extracts)

 

" In the Schirmer test, a bent piece of filter paper is placed in the lower

conjunctiva and left there for 5 minutes. In normal people the paper will be

wet to 15mm or beyond after 5 minutes, whereas a definitive positive result is

less than 5mm after 5 minutes. This test can be useful to help exclude or

confirm significant dryness of the eyes, but it is not specific for the

disease "

 

" Management: There is no specific treatment for the disease but the problems

of dry eyes and dry mouth can be contained. Avoid anticholinergic drugs.

 

Eyes:Artificial tears should be applied liberally. There are various types

and some of the more viscous ones need less frequent application. Patients may

try several and see which ones they prefer. If application at intervals of

less than 4 hours is required then preservative free preparations are

preferred to reduce irritation. Overnight a more viscous preparation such as

Lari-lube may be helpful.

Mouth:Patients should be encouraged to drink plenty to keep the mouth moist.

Artificial saliva is available and pilocarpine tablets are licensed for

those who have some residual salivary function left. The dose is 5mg tablets to

be taken 4 times daily, before each meal and at night. Saliva contains IgA and

other anti-infective agents and so attention to dental hygiene is required

and periodic use of antiseptic mouthwash may be beneficial. Topical fluoride

and avoidance of sugars is recommended._6_

(http://www.patient.co.uk/showdoc/40001283/#notes)

Other features:Vaginal lubricants may be required and infections such as

vaginal candidiasis are more likely. Dry skin may benefit from emollients.

Complications:

* Associated autoimmune diseases may become manifest and need

management

* Infections of eyes and mouth are more likely. The parotid gland may

be infected with staphylococcus, streptococcus or pneumococcus.

* Watch out for parotid tumours in a hard, unilateral gland

* Some, but not all studies, have found an increase in the risk of

developing _non-Hodgkin's lymphoma_

(http://www.patient.co.uk/showdoc/40001590/)

, usually around 7 or 8 years after diagnosis_7_

(http://www.patient.co.uk/showdoc/40001283/#notes)

Prognosis is generally good unless an associated disorder occurs when the

prognosis is that of the new disorder. "

--------------------------------

 

Probably enough info to get you started Jen. Let's know how you get on.

 

Molly